Stupid comments ....

solfeo

Hi Sassy - sorry for all you went through after your husband died. I think the reaction you got from your female friends is also typical when marriages end for other reasons. Especially long-term marriages later in life, because I've seen it happen to friends of mine. I don't even know if it's conscious, but women might feel instinctively threatened by unattached females and that may influence this behavior.

In the case of at least one Awesome Helper of Newbies (helped me!), I know she took a break in October in protest of BCOs War on Halloween. Something I didn't even know existed because I block all the ads. Maybe we will see others trickling back.

Because of my weird time zone by the time I get up in the morning, most new arrivals have plenty of responses and there is not much for me to add. I try to pick up the few threads that fall through the cracks and don't get a response. I feel like that is the worst thing that could happen - pouring your heart out about how scared you are, and no one saying a word. I answer those even when I have nothing of value to say, just so they know someone is listening. But in general I haven't been around as much as I used to be because we are expanding our business and I don't have time.

Glad you and Donnie found each other!

sas-schatzi

Solfeo,Thanks for responding, I was just having a bit of a pity party, I'm good now. Donnie's good. A very fun thing happened Retsky asked me to be involved in a study he's trying to get grant approval. It may require travel across the pond. Cool eh Good luck with the business expansion. BTW you were on mark witht he women's response. I was shocked b/c it was so undeserved.

Jumpship

Scared67- I totally agree. I want to get old too

GreenEyes81

I started to read this post when I was first dx....thought it was horrible. Well...now that I am down the road a bit my self...I have one to add. lol Mine is genetic, didn't know it before my unilateral mx...considering having the 2nd one removed.

Why in the world would you cut your breast off if there is nothing wrong with it?

Still dealing with that one...and stopped sharing with this particular person. Don't need the lac of support even if it is unintentional.

tlfrank

Last week at my mapping session, in response to a question I asked one of the workers in my RO's office actually said "well, if you had real cancer......"

Wait a minute, if I don't have "REAL" cancer tell me again, exactly why do I have to have radiation for 33 treatments? She's obviously in the wrong line of work.

Lula73

greeneyes- I’d have to turn around to her and say, “because if I don’t it will likely kill me after making my life a living hell. Why wouldn’t I remove it?”

MrsWinnie

@greeneyes yep i had double mastectomy (love it btw) my husband reponce to that one (please uni boobers dont take offence) "why would she want to walk in circles for?" Or deal with bras and prosthetic. Hugs. My family favorite topic now at the dinner table is making come backs to stuiped comments. So the walk in circles is my favorite to that one. Hugs

Omg tlfrank I would have reported that one to my oncologist name and all. Shame on them

solfeo

I'm two years out from BMX without reconstruction, and at my follow-up appointment with the BS earlier this week she was still putting pressure on me to do recon. She almost sounds like she is in disbelief that I don't miss my breasts or want new ones. How dare I not care? There must be some secret longing for breasts that I haven't come to terms with. Well, after two years I think I would know how well-adjusted I am in this area, but other people seem to be bothered by this perceived "deformity" more than I am. That's why I never tell anyone, because they look at you differently and project their own insecurities onto you. Who needs that kind of judgment?

She said other things that I could complain about if I had more time, but I'm sure I'll be back later to share more. I'm so glad to be down to annual checkups, but she said if I wanted to I could continue to come every six months. I politely declined, but I was thinking, "Why would I want to hear your stupid comments twice a year if I don't have to?"

sas-schatzi

Yay Solfeo, moving on ....another Yay!

kathindc

Solfeo, 👍Good for you.I thought of two come backs you could toss her way. 1) Breasts don't define me as the woman I am. 2) I'm a very secure woman who doesn't need breasts to remind me that I am one. Can you tell I'm a flatty? LOL. Have been for five years and sure don't miss the discomfort of bras in the summer.

DancingElizabeth

I had the reconstruction done, but not sure I'm happy about it...

I hate that I ever had boobs - for what they've done to me. The only reason I went thru with the reconstruction is for my DH - who then proceeded to tell me that he thinks that they are too small. WTF - they are not even real.

If he gets excited over 100% FAKE boobs - he should buy himself a life size Barbie doll...

solfeo

Thanks sassy and kath!

Every time I tell her the same thing, short and sweet. "I still don't miss 'em, still don't want 'em." I think she sees the job as unfinished until recon occurs, even though she doesn't do that part of it. That's her biggest concern at every appointment, but she is very good at dismissing every real concern that I have. It's infuriating.

I wish there was more support in general for women who don't want reconstruction. It's like the whole process is set up from the beginning to make you feel like less of a woman if you don't. Every step of the way there was someone there to tell me all about how devastated I was going to feel when I lost my breasts. Doctors, psychologists, social workers, other BC patients. They are obviously trying to prepare you for the blow, and I understand the need for that, but I wish there was more emphasis on feeling good about yourself however you choose to go forward, and not so much pressure to conform. No one has ever said to me, "You can have a normal life without breasts if that is what you want."

Scared67, next time your husband says something like that, tell him you would never shame him for his penis size, although you certainly could! That will shut him up.

sas-schatzi

Solfeo, you were on a roll with that answer to Sacred67. The worst put down to a man is penis size hahaha, If they only had a clue it's really what they do with us and everything they do with the penis is the value, not the size.

Must admit, when Donnie and I got together the concern about scars was very high. Mine at the time even 3years post op still looked like I was put together with horse thread. But they meant nothing to him. One thing for a husbands reaction, different concern for a new partner. Duh. It works.

Your Doc has been indoctrinated(no pun). She's a non-listener. It's whatever floats your boat, is what ought to be.

Scared67, sorry your husband isn't just joyful you are alive. Well, if he's truly truly is only focusing just on the boobs, then perhaps you ought to be making moves to protect yourself from a divorce. That may sound incredibly harsh. But better to be prepared than surprised. Know everything about your finances and assets. Where all the money is etc. Become familiar whit what comes in and goes out. If you don't know online banking learn it. Track all credit cards. Credit karma is a good place to find out and track your credit score and what cards are in your husbands and your names. Credit Karma is free and secure.

Except for a few years, I let my husband handle the finances. We were fine. But what I learned is he didn't have a clue how to be frugal. I foolishly let him handle the finances after the first time I handled them after a job loss and he was out of state. Long story, but that's when I found out money could have been better managed. Then it was after he died and I had to take things over. Again things weren't wacko or anything, they just could have been done better.

Okay one example, he was an energy hog on the electric, I was oblivious. Budget billing was 250$ (high end was 350$)at his death in 2010. Instead of him thinking over the years how to conserve energy/money he just paid the bill. I did corrections. Same house with corrections, my average billing is 96$. High end 133$ --in Florida 2220 sqft under air. If you multiply savings, out over 18 years he was responsible, oh vey, money flying out the door into some else's pocket.

Just saying do things to protect yourself from surprises. He's demonstrating poor male behavior. Good adult male behavior is to protect your mate against all danger. Juvenile male behavior is focus on cleavage and hip size. This goes back for millennia. Like caveman time. Basic anthropology. Recent research still supports this. It's how a male is culturized today as to how they respond under duress in this present time that will show if they stay or leave when trouble happens.

DancingElizabeth

Thanks Solfeo and Sas-schatzi!!! - Very Good advice!!! My DH is more of a FH...for saying what he said to me. Even my NP, didn't like him. She told me that she thought he seemed unsupportive. I am learning to stand up for myself these days and it feels good. I no longer worry about him getting mad at me for defending myself either, because I don't feel like it's worth it anymore - and if he wants to leave - then that is more than fine.

My credit is good and I have a good job. He's been fired multiple times and credit score is low. Go figure.

sas-schatzi

Whoooeheee, girl okay it's out of you now. Now is the time to back off and be very very nice to him. You need to be sure all your assets are protected and he doesn't run debt up. I have ideas, but not a pro at protecting yourself under these circumstances. Not done right he could destroy your credit and leave you with a lot of debt to clear up.

Not saying you are looking at a marriage breakup, but be realistic and self protective. Based on your history and his history, not done right if there is a marriage breakup, you might have to pay alimony. Be very careful how you work this..

Hope someone jumps in here?

Do we have a thread on this?

gb2115

Sorry, I can't get over a radiation oncology staff member saying "if you had real cancer"....????

No seriously, the RO needs to know and that person needs to be written up. That is not only wrong, but rude and unprofessional. Geez....

solfeo

The stupid remarks made at the appointment with the BS last week have been nagging at me, and I decided it's time to ask her to stop doing it. I wrote a long email asking for clarification of some things, and an end to her habit of dismissing my concerns. I guess I'll either be getting an explanation and better treatment, or fired as a patient.

I have had a couple of lumps on my chest wall since the BMX, that she dismissed both times, saying that my type of cancer only has a 1% risk of recurrence in 10 years. That does not match what I was told by my oncologist, or the Oncotype DX test, which gave me a 9% risk. Because I couldn't get the ultrasounds from the BS I had to ask my oncologist. Both lumps were found to be cysts by two different radiologists at two different facilities. The most recent one was in August.

I had been waiting to talk to the BS about the fact that I'm still having benign breast problems after BMX, and what that means in terms of recurrence risk. My severe fibrocystic condition put me at higher risk of getting breast cancer in the first place, and that did happen! I don't think it was a stupid question, but I couldn't even get the question out because every time I tried she cut me off with, "They are not cysts. You couldn't have cysts because you have no breast tissue." Well, the radiologists beg to differ.

I also wanted to talk about lumps I have on the back of my arm on the cancer side. She dismissed those as well, as remnants of large weight loss. She said, "We will always assume benign causes with you." She has clearly already convinced herself I will not recur.

I live on an island where good medical care does not exist (at least 2500 miles from a better BS), and I have been having similar problems with all of my doctors since the diagnosis. I have pretty much had to orchestrate my own treatment with the help of Dr. Google and the fine folks who post here on BCO. With no better options I've been putting up with this too long. If she fires me I don't know what I will do if one of these lumps needs a biopsy, but she would never give me one anyway so I guess I have nothing to lose.

ShetlandPony

Solfeo, I agree your onc is too dismissive. Low risk does not mean no risk, and you need peace of mind. Could you fly somewhere great for a second opinion to get established as a patient, and then communicate with that second opinion doc via email and photos occasionally, to keep tabs on your local doctors?

solfeo

This is the breast surgeon doing the dismissing this time, not the MO. So far whenever the BS has done this my oncologist has picked up her slack and ordered the necessary imaging. Next time I see the oncologist I will ask for an ultrasound of the lumps on my arm and I don't expect a problem with that. I had lost my original oncologist to early retirement, and the second one was dismissive of some different problems, but I just found out the first MO has gone back to work and I asked for a transfer back to her. She wasn't perfect either but she was always more responsive to my concerns.

I could have tried getting a second opinion on the mainland all along, and I originally intended to, but the reason I never did is because between all of my doctors and with a little insisting I do always manage to get what I need in the end. It's way too much work, but whatever it takes. Once I got the low Oncotype score, and I knew there was scientific justification for avoiding chemo, I also knew I would never choose it regardless of a second opinion, so there was no point in incurring the expense of regular trips.

However, if the new/original MO and the radiologist want the arm lumps biopsied, and the BS refuses, I'll either have to consider a general surgeon or go to the mainland. I do think they are probably cysts and that would show in the US. This has been a lifelong problem and I have had them before in other places besides my breasts. The issue with the BS is that she keeps refusing to rule out malignant causes, and I don't think that is safe considering the fact that my cancer went undiagnosed for years for similar reasons. My breasts were so fibrous and naturally lumpy it was missed in mammograms and it took a long time for the cancer to stand out enough to feel it.

solfeo

As if this story hasn't gotten long enough, there is one more thing.

I'm in physical therapy for shoulder problems that are from a combination of the physical changes from the BMX and the fact that tamoxifen makes me more prone to injury. I have improved quite a bit, but I'm stuck at the moment and my regular physical therapist wants to send me to a lymphedema/oncology specialist PT for additional guidance. I think the specialist should know if these lumps on my arm are likely to be swollen nodes. They are not in a typical spot for that, which is one reason I am not as worried as I could be, but her recommendations will be taken seriously. She's also in a different health care system from the BS, so she won't feel constrained by whatever it is that keeps medical professionals from contradicting the opinions of their colleagues. I don't even have to tell her that these concerns have been previously dismissed and she won't have access to the BS's notes on the subject.

ShetlandPony

It sounds like you are doing a good job, solfeo. Sometimes this stuff is like a part-time job.

solfeo

Thanks. They usually send me a patient satisfaction survey but I don't normally fill them out because I haven't wanted to alienate anyone with comments that could be connected back to me. I think I'm done caring about that and I hope they send me one this time.

If BCO really wants to make a difference in the lives of breast cancer patients, they should embark on a huge campaign to re-educate cancer care providers on what our concerns are and how we need to be treated. I would donate to that! I can be pushy when I need to, but I hate it, and I think about the other people who are falling through the cracks because they don't have the energy for fighting the system and cancer too. It shouldn't be this hard.

HoneyBadger47

I apologize to anyone in advance if you believe this to be true. Not mocking anyone. A very good friend said this in text to me today after fining out I had just gotten out of the hospital for some new issues related to chemo I had.

They sent me Exodus 25:5. Said they could help to break my curse.

My response was: "Iteresting, but sounds like an easy out--blame your parents or God. Sometimes, chit just happens."

Response from them:

"It opens doors. Infirmity is a demonic stronghold, usually brought on by generational curse. It's about demons, not God or your folks. You simply break it. But I'll say no more."

Sorry. Don't really need that in my head space right now. As far as I know the demon attached to me was Tamoxin, and I was told to stop taking it due to the risk with the new conditions I was diagnosed with.

Am I wrong for being annoyed

tlfrank

HoneyBadger47 - You're certainly not wrong for being annoyed. I wouldn't have even been able to generate a response to that. You handled it perfectly.

sas-schatzi

Solfeo, I agree

sas-schatzi

Solfeo, honeybadger obviously believes what's she saying, but it's awful. Over the years I've met this type in nursing patients They are so hurtful to try and make folks believe it's demons and their fault. A POX on her Hahahah.

Pink24

I'm glad to have found this thread it's strangely sad yet uplifting yet relatable. I don't have IDC... don't know what I have yet as awaiting results this week.

I've hardly told anyone re my biopsy, scans and surgery (had all ducts removed and some surrounding tissue)I've told my siblings who haven't been supportive... one keeps telling me to eat properly and cut out sugar and sending me cancer prevention YouTube vids, the other keeps discussing it with her in laws instead of me and keeps 'my friend who had BC said...' and the other doesn't even bother texting. The few friends i told vanished on me. I told one 'best friend' and told her to keep it to herself... that night i got messages from a friend saying 'stay stong' 'everything will be ok' 'you can do this' when I asked 'best friend' why did I get this from our friend she said she felt she needed to tell them and not keep it from them hence why told a few of our close friends. I'm so p'd off that they're using this as gossip. I told them how I felt and that it's no one's place to tell people but mine and that i dont want people knowing until I know and get my head around things! They're all annoyed at me now... the cheek! Just glad that I have my Mum who is the best support. It's hard tosee people you have done so much for just vanish. The 'best' friend who told others came to see me once and said jeez one breast is so much smaller now good luck hiding it! Made her leave. People are annoying!

RAnt over sorry

HoneyBadger47

Tlfrank, thank you. Probably good it was a text so they did not see the confused look on my face.

Solfeo and Sassy thank you, as well.

Sassy, you may not realize it but you made my day with "a POX on her" I used to look at this thread and would laugh every time it was said. I

Knew I missed it but didn't put together it was you! Welcome back. Glad you are back and thank you for all that you do on this site! I have found many of your threads helpful and a great reference.

RaiderGirl, who started this thread has some fabulous comebacks.

solfeo

Demons? I don't think I've ever heard that one before. I would reply, "Thank you for saying no more." haha

You are not wrong. That is very annoying.

solfeo

I got an excellent response from the BS!

The difference in the recurrence risk she quoted of 1% vs. 9% according to MO and Oncotype is that she was referring to local recurrence, and 9% is the distant recurrence risk. It never would have occurred to me that local recurrence was less likely than distant since that's where the cancer lived. Not exactly comforting but clear.

Regarding the cysts, she said yes they are cysts, but not the same kind as the ones I used to get in my breast tissue. She said these often form after mastectomy in women with very large breasts. I'm not sure she can know that with certainty, but she agreed to investigate any future lumps that concern me, and that is enough for me.

All of this could have been resolved before I left her office if she had just let me finish a sentence. Hopefully she learned something since I pointed out that is what she had done. She was apologetic and my confidence level is up as a result.